Questions & comments 35

Chiari malformation

After having a conversation with a former client, I have decided to spend some time over the next few days to blog about a brain condition know as Chiari malformation. I hope to be able to share information about this developmental abnormality with the readers of my blog who are unaware of this issue, and what it means.

Chiari malformation is a developmental anomaly at the base of the brain which results in the downward displacement of some of the brain's structures into the spinal canal. The lower most part of the brain is the cerebellum and brainstem. This is the area just at the base of the skull which attaches to the spinal cord. This area is called the posterior fossa. The cerebellum is made up of three major lobes which are composed of nerve fibers connecting to the brainstem. There are two small portions of cerebellar tissue, called the cerebellar tonsils, which normally lie within the posterior fossa. A more detailed explination of the information above can be found here.

Dr. Chiari, back in 1891, first identified the Chiari type I malformation. The problem occurs when the posterior fossa is not properly formed and the brainstem, instead of sitting properly in the posterior fossa, is displaced downward, causing pressure on this part of the brain and the spinal cord. There is also an obstruction of the normal flow of cerebral spinal fluid through this area because the tonsils of the cerebellum are stuffed into the funnel.

Written By:rebecca On October 14, 2004 12:30 AM

I am a 32 year ild that has recently been diagnosed with chiari type 1 malformation. i had my mri back in march of this year. i was treated by two doctors who both have seen the mri and did not tell me that i had this. i was referred to a neuro specialist who said i was born with this. i have never had any symptoms until i was hit in the back of the neck and shoulders with several boxes at work... is it possible top have gotten this from that accident? i have been under doctors care for this accident for 11 1/2 months.

Written By:Bruce H. Stern On October 20, 2004 7:12 PM

As I wrote in my prior post to which you responded, scientific research has demonstrated that trauma to the head and/or neck is sufficient to aggravate and make symptomatic a preexisting Chiari I malformation which previously caused no symptoms.

It is important that you retain an experienced workers compensation attorney to represent you and who can retain the appropriate specialist to causally relate your now symptomatic condition to the work-related incident. It is important to recognize that every state has its own laws with regard to the time frame in which a claim must be made. Failure to act in a timely manner could result in a claim being barred.

Written By:Sonia On March 2, 2005 9:22 PM

My 4 year old son was just diagnosed with Chiari Type 1 Malformation, after an MRI. He has been globally developmentally delayed since birth, and also experiences many of the symptoms most medical sites have explained about Chiari Malformation. The doctor that diagnosed it, said that Type 1 is rarely treated, and that my sons' 5 mm deviation isn't big enough to be causing his symptoms.
Could his traumatic birth have caused it? I pushed for 3 hours, as he was stuck. As he was crowning, his heart stopped. The doctor reached in, grasped around his neck, and pulled him out by bracing her foot against the delivery table. Could the combo of being stuck, and being yanked out, have literally shoved his brain downward?

Written By:brandy On March 18, 2005 3:43 PM

My son is 3 and was also just diacnosed with AC1, however 9 mos ago we were in a car accident, and he was fine before the car accident also. He seems to be o.k. now but the MRI indicates the AC1, something that he was born with supposedly, he now has enlarged ventricles in the brain which I think are from the blockage caused by the lower part of the brain. I think it makes perfect sense however doctors seem to think they know everything. I went to see a nuerologist yesterday and she looked on GOOGLE! I could of done that...well I've been doing it, how about a real nuerosurgeon who actually knows what they are talking about explain this to me! I see where the 32year old is confused! Help!

Written By:natasha On May 5, 2005 11:04 PM

My 17-year-old son was diagnosed with Chiari Type 1 when he was 9. He wants to play football this year and I am not sure he should. At diagnosis the doctor told him he should not play contact sports. Just wanted to know what your thoughts are.

Written By:Darla On June 9, 2005 5:40 PM

I am 37 years old and have been experiencing headaches for several years. Recently the headaches have become worse with sevear pain in the back of my neck. Dizziness is now occuring everyday. I have been DX with Chiari 2 and am scheduled to see a neurosurgeon. If I choose not to elect for surgery does that put me at a greater risk for brain degeneration in later years?

Written By:mikayla On June 28, 2005 3:48 AM

I am 17 and was just diagnosed with chiarl malformation 1. And I have a great deal of numbness in my arms and i have suffered sports injuries... I just wanted to know that if I did nothing about the pain would the chiari get worse and eventually be fatal...?

Written By:Robin On July 5, 2005 11:48 PM

I am 51 years old and was diagnoised with Chiari 1 after years of severe headaches, and neck pain (my head felt as if it were to heavy for my neck to support). Sometimes the h/a is so bad - to the bed I go. The MRI revealed it. My neuro doc said surgery would only relieve the symtoms not rid me of the condition. I too am having dizziness, pain, tingling and burning sensation in each upper extremity. I am also a CCRN, and choose not to not to have surgery.

Written By:Lisa Mason On July 13, 2005 1:13 AM

I too was just informmed about a month ago that m 7 year old has AC1 and was told he willhave an MRI probly ever 3 to 6 months till they see how its progressing and that if he shows signs of vomitting double vision get him too a hospital but if headaches occur too act fast as it could indicate its about to rupture.....is this true????? also can this make a person become like a stroke victom and need a wheel chair?????? can this cause speech delays.....very worried and concerned because the specialist said that he may wake up one day and not walk. please hjelp with this

Written By:Claire On July 20, 2005 10:50 PM

I had surgery to decompress a Chiari Malformation at the age of 10. I never had any symptoms, but had a severe spinal curve (scoliosis) as a result of the chiari malformation. It is 15 years later and I am a very healthy active adult. I have never had problems or symptoms again. Hope this makes parents/ newly diagnosed patients feel some relief!

Written By:Carmel Drago On August 5, 2005 1:26 PM

Can a 15 y/o male, totally asymptomatic play high school football wearing a personally fitted brace from back of helmet to shoulder pads safely?

Written By:Connie Fowler On September 29, 2005 9:10 PM

I have read some of your questions with Chiari malformation. My son was diagnosed with chiari in 2000 we battle Dr to help us as this is a rare disorder but rather you have 0 mm chiari or longer symptoms can be severe and un treated be life treating if you or your child are having symptoms and getting worse then most likely surgery may be needed, Most important listen to your child not the DR as so many are un familiar of having Chiari and its life threaten conditions. Connie

Written By:Tim On October 20, 2005 2:54 PM

I AM 27YEARS OLD AND I HAD SURGERY FOR CHIARI ABOUT 7 YEARS AGO AND ALL OF MY SYMPTOMS WENT AWAY UNTIL RECENTLY. FOR ABOUT 4 MONTHS NOW WHEN I LAY ON MY BACK AND CLOSE MY EYES I BOCOME EXTREMELY DIZZY AND OFTEN HAVE TO VOMIT. I WAS WONDERING IF THIS COULD BE RELATED TO CHIARI OR MAY THERE BE SOMETHING ELSE GOING ON? IF ANYONE HAS HAD THIS HAPPEN TO THEM, OR MAY KNOW THE ANSWER PLEASE LET ME KNOW.

Written By:Nita On November 9, 2005 10:46 PM

My seven year old son was recently diagnosed with a chiari malformation after an MRI to look at his pituitary. He also has Growth hormone deficiency I believe the two ocnditions may be related however the neurosurgeon says no. He is asymptomatic adn will need an MRI to check for syringomelia.

Written By:Beverly Sikes On December 14, 2005 10:53 PM

Need info ASAP.

Hello, I have just found your blog. I have also just been told that an MRI showed a Chiarl malformation.
I fell in August. Since then I have had severe neck pain just doing simple things. Unless I take very strong muscle relaxers, my neck "freezes" at night if I roll onto my back or left side. I have always had headaches and they were deemed tension headaches. But since the fall, the headaches have been incredible. At least one, sometimes more a day.
Could my fall have aggravated this condition? I have legal counsel, but not specialized council like you seem to be. Is there any way I can prove that the accident aggravated this? Is there treatment? I don't have a clue.
My next appt. with neurologist is Dec. 28th. Am in small rural area, the quality of care is not great. I would like to be able to know whether this doctor knows what he is talking about, or whether to find a new one.
Beverly Sikes

Written By:Beth On January 4, 2006 5:09 PM

I am a 41 year old female and was diagnosed with Chiari about two years ago when I was involved in a serious car accident. Started having severe neck pains and headaches. When seeing the Neurosurgeon concerning it, I told him that there was no way that I was going to have brain surgery.

Now, two years later, I am starting to have very serious problems with balance, gait and speech among other things and I have almost no energy.

I did have several problems before the accident. Stomach problems, (gallbladder removed and was diagnosed with Diverticula with bouts of Diverticulitis/losis) and feeling as if my head was going to explode when coughing.

I have decided to have the surgery and would like to know if there is someone in Louisiana that is qualified to perform this surgery. The doctor I am seeing does not seem to know alot about this and I am very sceptical about using him.

If anyone has any suggestions, I sure would appreciate it.

Also, my attorney would like some information on auto accidents and worsening of Chiari Malformations.

Written By:Julie On January 5, 2006 2:18 AM

I'm 18 yrs old and recently during a MRI to check my pituitary my doctor told me I had a chiari 1 malformation. I went to see a neurosurgon about a week ago and all he told me was that I shouldn't smoke and that I look younger then 18, he then said that he couldn't see what the radiologist or my regular doctor saw. I was diagnosed with Juvennile Rhemutiod Arthritis about 4 years ago and I have suffered from unexplainable stomache pains since I was a child. About 2 years ago I started to expirence migrane like headaches that would leave me bed ridden for hours. I was wandering if these could all be caused from the Chiari 1.

Written By:gary On January 29, 2006 8:40 PM

Are there specific treatment for Chiari Type 1 Malformation if you are a 56 yr old female??

Written By:Ellen Pasillas On June 10, 2006 6:49 PM

I am 24 yrs old and was just diagnosed w thoracic cord syrinx and chiari 1 malformation.I will be seeing a neurosurgeon out of my area. I have had all these symptoms for years, been to neurosurgons, to the ER, and regular dr. because of these. 2 1/2 yrs ago the left side of my face went paralyzed. I was told at the ER & by my neurologist that it was Bells Palsey.Could this "bells palsey" have been related to chiari i & syrinx? Could my problems be the cause of the epidural i received when giving birth to my 2 1/2 yr. old. my problems started right after she was born. the "bells palsey" came 2 days after giving birth. Could it all be related? And couldn't the doctors have prevented so much pain,suffering, and humiliation that i have gone through these last years???? I really think my local hospital neglected diagnosing me. I went in to the ER at least 5 times in 2 years and they asked if i was depressed because depression causes pain!!!! if anyone can help me make justice please let me know.

Written By:KIMBERLY DOMMASCH On July 6, 2006 3:50 PM

I AM A 38 YR OLD MOTHER OF TWO FROM CANADA. I WAS INVOLVED IN A CAR ACCIDENT IN NOV.2000 I WAS DIAGNOSED WITH SOFT TISSUE DAMAGE. NUMBNESS AND TINGLING OCCURED IMMEDIATLY FOLLOWING THE ACCIDENT ALONG WITH A CONSTANT BURNNING IN MY FEET AND CONSTANT HEADACHES. AFTER RETURNING TO THE DOCTORS NUMEROUS TIMES AND SEEING A NEUROLOGIST I WAS TOLD IT WAS NOTHING MORE THAN SOFT TISSUE INJURY. IT WAS FELT THAT THESE SYMPTOMS WERE ALL IN MY HEAD AND THAT IF I CONTINUED TO WORK AND EXERCISE THAT THE SYMPTOMS WOULD GO AWAY. I SETTLED A CLAIM WITH ICBC FOR ONLY $ 5000 AND CONTINUED TO WORK BUT MY SYMPTOMS PROGRESSIVLY HAD GOTTEN WORSE. I RETURNED ONCE AGAIN TO THE NEUROLOGIST WHOM FINALLY AGREED TO GIVE ME AN MRI. I WAS DIAGNOSED WITH CHIARI TYPE I MALFORMATION. I HAD UNDERGONE SURGERY IN 2003 WHERE THEY SHAVED THE SCULL AND SHRUNK THE TONSILS TO RELEIVE THE PRESSURE. POST SURGERY IT TOOK ME AT LEAST A WEEK TO PROPERLY WALK ON MY OWN AND THE PAIN WAS VERY SEVERE. 5 DAYS LATER I WAS TOLD THAT I WAS ABLE TO GO HOME. MY SURGEON HAD LEFT ON HOLIDAYS PRIOR TO MY LEAVE AND WAS SEEN BY A DIFFERENT SURGEON THAT I WAS OK TO GO. DESPITE THIS I WAS VERY UPSET AND FELT THAT THERE WAS SOMETHING SERIOUSLY WRONG. I BEGGED THE NURSE TO LET ME STAY AND REMEMBER A HORRIBLE EXPERIENCE OF HER YELLING AT ME THAT I WAS FINE AND THERE WAS NOTHING WRONG. SHE DID THIS AS I WAS BEING WHEELED DOWN THE HALL BY MY MOM AND MY KIDS BY MY SIDE. DESPITE THIS I LEFT AND WENT HOME. THE PAIN WAS VERY SEVERE STILL AND I WAS GIVEN SOME STRONG PAIN MEDS. MY MOM AND DAD STAYED WITH ME IN MY HOME TO MAKE SURE THAT I WAS OK AND TO HELP TAKE CARE OF MY KIDS FOR A WEEK OR TWO. I WAS POPING THE PAIN MEDS LIKE CANDY AND THE PAIN WAS GETTING WORSE AND WORSE. AFTER BEING HOME FOR TWO DAYS I WAS STARTING TO OVERDOSE ON THE MEDS AND WAS STARTING TO VOMIT. I CRAWLED FROM THE COUCH TO THE BATHROOM AND AWOKE MY MOM WHOM HEARD ME CRYING. SHE RAN TO THE BATHROOM AND WAS SHOCKED TO SEE THAT THE 37 STAPLES THAT I HAD IN THE BACK OF MY HEAD WERE JUST REMOVED AND 1 DAY LATER THE INCISION SIGHT SPLIT WIDE OPEN AND BLOOD WAS RUNNING DOWN MY NECK. THEY RAN ME STRAIGHT BACK TO THE HOSPITAL AND I HAD MASS AMOUNTS OF FLUID ON MY BRAIN. MY BODY SWELLED UP OVER 30 LBS AND SUDDENLY MY LYMPH NODES WERE ENLARGED ALL OVER MY BODY. THEY REMOVED ONE IN MY NECK AND HAD A DISEASE SPECIALIST FLY IN TO SEE WHAT IT WAS. HE FOUND NOTHING. I HAD QUITE A FEW CAVITIES AND IT WAS THOUGHT BY THEM THAT IT WAS WHAT THE INFECTION WAS FROM. I WAS PUT UNDER AND THEY REMOVED 5 TEETH FROM THE TOP AND 5 TEETH FROM THE BOTTOM. 10 TEETH GONE AND IT WAS NOT THE CAUSE. NO ONE COULD TELL ME WHAT WAS WRONG AND I FELT HELPLESS. I REMAINED IN THE HOSPITAL FOR 6 WEEKS AND HAD A SPINAL TAP THEY DRAINED 3 IV BAGS OF EXTRA FLUID FROM MY BRAIN EVERYDAY FOR 6 WEEKS. NO ONE HAS EVER TOLD ME WHAT IT WAS FROM. ITS BEEN A FEW YEARS SINCE SURGERY AND I AM STILL VERY SYMPTOMATIC. I HAVE SINCE FAINTED, STILL BOTHERED BY NUMBNESS, BURNING FEET, EXCRUCIATING HEADACHES THAT DROP ME TO THE FLOOR, MY CONCENTRATION IS POOR, AND FEEL VERY DEPRESSED. I HAVE NOT BEEN ABLE TO RETURN TO WORK SINCE AND EVEN AT A SEDENTRY JOB MY LOWER LIMBS GO NUMB. I HAVE NEVER RECEIVED ANY KING OF DISABILITY AND FEEL LIKE I AM STILL GOING CRAZY. I HAVE FINALLY BEEN BOOKED FOR AN MRI AGAIN AND WILL AWAIT THE RESULTS. I HAVE BEEN TOLD BY FRIENDS AND FAMILY THAT WHEN I HAVE THESE BOUTS THE BACK OF MY NECK SWELLS AND BECOMES INFLAMED. I HATE GOING TO MY FAMILY DOCTOR BECAUSE HE ONLY TELLS ME THAT EVERYTHING IS FINE. I TRULY FEEL AS IF I AM CRAZY. BUT I HAD THESE SYMPTOMS BEFORE AND THEY DIDN'T BELIEVE ME AND THEY WERE PROVED WRONG. WHY SHOULD I HAVE TO GO THROUGH THIS WHEN THESE SYMPTOMS ARE VERY REAL. CRAZY IN CANADA, AFRAID OF DOCTORS. COULD SOMEONE PLEASE LET ME KNOW IF THEY TOO HAVE BEEN THROUGH THIS.

THANK YOU
KIMBERLY

Written By:Nicole On July 19, 2006 9:27 PM

I was diagnosed with chiari 1 last year, but the neurologist did not seem to think it was a big deal since it is so slight and was not apparent until they did a special protocol MRI. My problem is that I am such a hypochondriac and react to stress physically (and working and going to school full time has me stressed out 24/7/365). I would suggest that those of you in doubt get a second opinion. I also read that Chiari 1 is not a "true" chiari unless you experience the more debilitating symptoms of it, and I have not. My doctor originally thought that a persistent tingling on my toe was MS, but that was ruled out by the MRI, and the chiari was not thought to be a factor in the numbness. I wish you all the best of health and much comfort, because I know this can be scary.

Written By:J . Patrick Epling On August 15, 2006 3:19 PM

My 3 year old daughter was just diagnosed with Chiari 1. She was born with tortacallus and a rear head shape deformation. We have been going to doctors for the past three years trying to make sure that the head misshape was not going to cause any problems. I can not tell you what a fight it has been. My daughter has been complaining of a head ach for the past month. We finally, after much fighting, got the insurance company and the doctor to run an MRI. Well the test results are in. Is surgery required? What are my options?

Written By:Oralia Willamson On September 26, 2006 7:03 PM

I am a 38 yr female in Aug-2006 I was diagnosed with Chiari1. I had bells palsey 6yrs ago and have had headaches for the past 15yrs. I am have difficulty sleeping,weakness in both arms/hands, neck pain,numbness/tingling in arm and hand, fatigue,nausea,shortness of breath,blurred vision,tinnitus,
difficulty swallowing and leg weakness.Just recently I have had black-outs while driving.I have more bad days then good days. My neurosurgeon says that I don't need surgery right now that in 6 months he will see how I am progressing.It took 4 MRI's in the past 3 months before I was told that I had Chiari 1. I'm at a lost don't know what to do.If anyone has any advise for me please help.

Written By:Cole On October 1, 2006 3:23 AM

I was just recently diagnosed with chiari 1 and i have been playing highschool football for three years, so far, it has had no effect on me whatsoever. I do, however, wear a cowboy collar (type of added protection) for increased safety as advised to me by several doctors at Mayo Clinic in Rochester, Minn.

Written By:Whitney On October 17, 2006 7:55 PM

I am 28 yrs old and was recently diagnosed with Chiari Type 1. I have had three neck/head traumas this past year and 4.5 months ago i began experiencing nausea. I didn't have any other symptoms for the longest time but recently have started getting headaches. The doctors don't know for sure if my nausea is being caused by the chiari or not. They don't have any other explanation for the nausea however. I also have a syrinx in my thorasic spine. I've read that untreatable nausea is a red flag symptom that you should have surgery but does that hold true if you don't have many of the normal symptoms?...no one else seems to have nausea be their dominant symptom...has anyone else experienced this?

Written By:Stacy On January 4, 2007 9:03 PM

Hello, my son is 15 years, old, and almost since he could has played contact sports. He recently had suffered what he had thought to be a concussion. Which this has happened in the past, but the first time we had gone to the ER. Whereas they performed a CT scan, which they said at the time in the ER, was negative, but some 9 days later I get a call from the pediatrition, citing that after being reviewed, that he has Chiari l malformation. He said he needed to consult with a Neurosurgeon, I stated that he is currently in a contact sport, wrestling, is that ok? He said should be fine. What is this disorder? What do I need to prepare my son for? I haven't even told him, that the Doctor called today, and stated what was on the report.

Written By:MAH On January 14, 2007 2:39 PM

My daughter is 12 and has had headaches and small migraines all of her life. Recently they turned into big migraines and she lost perifpheral vision, numbness in the hands, dizzines. We were told she had Chiari I Malformation and should contact a neurosurgeon. We went to DrSmyth at St. Louis Childrens hospital. She had the decompression surgery 4 weeks ago and is doing great. The doctors and staff at this hospital are just great. Her condition was 2.2 cm down her neck which was causing the spinal column area to be over crowded and no spinal fluid could move like it should which causes pressure on the spine and head. I would recommend surgery because this condition is like a time bomb and can cause paralysis, death, scholiosis - all sorts of problems. Her case was so severe that if she had no symptoms they would of operated. This is a birth defect that we never knew she had. Thank gosh for the drs at St Louis Childrens.

Written By:Melissa On January 19, 2007 12:18 PM

My 2 year old daughter was recently diagnosed with Chiari 1 after a MRI brought on by a car accident. We saw a neurosurgeon. He said to watch for headaches and neck pain and that surgery was 50/50. I have a lawyer for her neck injury from the accident should I be concerned that the accident will make matters worse for the Chiari? Should my lawyer be concerned with this issue? What happens if she has problems and needs surgery later on down the road how do I know the accident wasnt to blame and the people that hit us should be held accountable?? Please help

Written By:Rosa Garcia On January 19, 2007 7:34 PM

My daughter is 14 yrs. old and was diagnosed when she was 5yrs. old. She has been in the hospital for almost 2 weeks due to severe head aches. The neurosurgen keeps giving us the run around about surgery. Thinks this is an elective surgery and not an emergency....Don't know who else to turn to!!

Written By:barb On January 21, 2007 11:40 AM

i have been diagnosed with chiari 1 malformation 2006 .they sent me to a neurosurgeon . i asked if i needed to do a follow up and his answer was no come back if symptoms get worse. my neuorlogist also said i did not need a follow up. my neurologist said if symptoms got worse he would send me to dallas or lubbock texas for furhter evalluation. my symptoms started 2 yrs ago with neuropathy down both legs and arms , facial pain , severe burning pain in feet, nausea at times, bending and squatting will cause nausea,i have muscle spasm at n ight in hips and shoulder blades. i am currently on lyrica, clonidine, celebrex, darvacet. i feel like the neuroligist and neurosurgeon should follow up my mri. i am currently going to pain management i suppose they will monitor me and send me back to neurologist or neurosurgeon if symptoms worsen . my symptoms are some what under control at this time, i have good days annd bad days , working fulll time is a challange. my chiari 1 malformation is 10mm. does anyone else have the same symptoms.my symptoms are worsened with activity. have a great day

Written By:Renee On January 22, 2007 9:30 PM

I'm 31 yrs old and was diagnosed with Chiari 1 in October 2006. My symptoms have gotten progressively worse. I had to switch neurologists because the first one I went to just blew me off stating I had migraines. She swore the medication would take away all the headaches, dizziness and numbness and pain in my arms and legs. I got much worse on the medication. The new neurologist I go to is great. He has walked me through everything step by step. I go to the neurosurgeon tomorrow to see what my next step is. Recently my symptoms have progressed to where I'm not safe being with my children alone. I'm actually hoping that the neurosurgeon will opt for surgery so that I may possibly go back to having a normal life.

What I want to know is if it is safe to have more children after having the surgery?

Written By:Melodie On February 18, 2007 8:12 AM

It seems to me when you mentioned about a Chiari Malformation I, alot of people have questions and really need some answers. Here is a suggestion, I belong to a really GREAT support group called Chiari Connection International, they can look it up by typing in Arnold Chiari Malformation Association and go to it under yahoo. It is under groups and boards. Type in Chiari Malformation, you have to sign up, and be approved through the groups moderators,but they are great people and VERY helpful. I know,My mother has MS and Chiari I, I have Chiari I, and both of my daughters have Chiari I's. Try this group, you will love these people,especially Kathy.

Written By:Dana On March 3, 2007 5:07 PM

I am 18 years old and went through the chiari 1 decompression surgery in december of 2005. The tests first started when I passed out trying out for the high school volleyball team. The doctors put me through heart, lung and endurance work ups before finally they took an MRI of my brain. The neurosurgeon in my area said that my chiari was not enough to cause the symptoms I had been having. We got a second opinion from a neurologists we trusted and he insisted that it was the cause of my problems. I then went back to my neurosurgeon and with the help of my neurologist, persuaded my surgeon to do the surgery. I was in the hospital for a week, with a very painful recovery. But here I am over a year post op and I'm doing great. I never realized how sick I was. I am here to for anyone that has questions for a first hand experience because I know I would have liked someone to have been there to answer questions for me.

Written By:Melissa On March 9, 2007 11:17 AM

I too, like all of the other comments, Have ACM Type 1. About 9 years ago, I started having horrible unbearalbe pain in my head. I went to the hospital 2 times, before they figured it (2 days in a row), however, after putting me through a spinal tap and 2 cat scans, they told me I had a brain tumor! I had to see a neuorsuregeon the next day. He told me not to worry, it was not big enough, just to have it check anually to see if it grew. I had it checked 2 years later, they said the "TUMOR" was still there, not any bigger, and "don't worry, keep having the MRI's" they are expensive and I went along time with out having one. Then one day, I got horrible symtoms that have not stopped & they said it was not a tumor, I had ACM type 1. Don't worry though, it is only 7 mm. It is not causing your symptoms. I have been to several doctors in a circle, they refer me to each other. They also said that the MRI showed that I had panisinitus (severe sinus infection) after several rounds of antibiotics, they said it was clear on the CAT scan, 2 of the doctors told me that, the 3rd one said, it is still there, I am reading the results right here. Nice, Can't anyone ever tell the truth, I think it is half the ACM and half the sinus infection, due to the symptoms I am having. Anyway, I had MRI's and CAT scans when I was little and there were no signs of any trauma or ACM or "BRAIN TUMOR!". It wasn't until I was older that anything showed. I had a car accident and stuff, in which could have caused it, they said. Thanks for letting me vent.

Written By:kember On March 9, 2007 7:04 PM

i am 25 yrold f mother of 2 i was diagnosed with Ciari in dec of 06 and is weighing the option of surgery
i do have symptoms of numbness in both arms , now my back anleg have a burning sensation.
i need help please

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